Sunday, September 27, 2015

This past week, the media has reported the case of two
families in Sunnyvale, California, who filed a lawsuit against the parents of a
boy with autism. Filed in June 2014, this lawsuit is now being heard in court. [To
read a news report of this case, please click here.] The plaintiffs allege that
the parents, who were their neighbors, did not do enough to control their now
eleven-year-old son with autism and that this boy terrorized their
neighborhood. Moreover, they claim that his aggressive presence in the
neighborhood could reduce their property values. Even though this family moved
out of the neighborhood a year ago and say they have no plans to return, neighbors
fear they may return to their former home that they have not yet sold.

Since there are at least two sides to every story, the judge
must determine what was happening in that California neighborhood. Are the
neighbors filing the lawsuit intolerant of autism, or are they simply
protecting their children from an aggressive child? Are the parents of the
child with autism doing the best they can in a difficult situation, or are they
negligent, failing to control their son from harming others? The courts will
decide.

According to the neighbors, the boy with autism repeatedly kicked,
hit, slapped, and bit people, especially younger children. As one plaintiff
notes: “For us this case is not really about autism. It’s about the safety of
our children. They were attacked on multiple occasions.”

Moreover, they claim that the boy’s parents and babysitters
did not properly supervise him, which led to his being a threat to other
children in the neighborhood. “This has to do with the parents’ responsibility
to control their child,” said one of the neighbors.

Of course, parents of children with autism fear that this lawsuit
could encourage intolerance toward their children and potentially generate
similar lawsuits. This week, the Huffington Post published an online response
to the California lawsuit by autism mom and activist Bonnie Zampino entitled
“My Son Has the Kind of Autism No One Talks About.” [To read this essay, please
click here.] In her heartfelt essay, she discusses the lack of true autism
awareness, which she attributes to media feel-good stories about autism
emphasizing rare achievements and ignoring problems associated with aggression
in autism.

Drawing from her own experience with her son who has
struggled with autism and aggression, Ms. Zampino explains the isolation that
comes with a child whose behavior is not socially acceptable. She notes,
“Because I didn’t know what my son was going to do to other children, we
stopped going to the park.” She adds that they also stopped going to the
library, birthday parties, and play dates.As a result, she states, “Because of my need to isolate my
son, I also isolated myself, too.”

Moreover, she challenges the comments by the plaintiffs in
the California lawsuit who claim that their case is not about autism. She
points out that a lack of autism awareness has caused these neighbors to fail
to understand the issues the family whose son has autism are facing. She notes,
“Autism can be sad. Autism can be messy. Autism can be violent. Autism can be
isolating.” However, she also believes that once people truly become aware of
autism, even the often hidden negative aspects, “We will become a true village,
including those who can model appropriate behaviors and those who are trying so
hard to learn them.”

Having dealt with Alex’s aggressive behaviors linked to
autism, I know how terrifying and upsetting this behavior truly is. While I can
empathize with those autism parents who are isolated from the rest of society
because their children’s behavior poses a threat to others, I think this is
necessary until their children’s behavior can be managed. Until our children
learn to interact appropriately, we must protect others from their aggression.
Moreover, we need to respect that other parents have the right and
responsibility to protect their own children, just as we want our children to
be protected from those who might harm them.

For long periods of time, we had to isolate Alex from the
world because we could not trust him to behave appropriately. Ed or I would run
errands such as grocery shopping alone while the other stayed home and
supervised Alex. We could not do typical family outings because we were not a
typical family; we had a child with autism who was overwhelmed in social
situations and overreacted to sensory stimuli. We could not attend family
gatherings because we never knew when he might suddenly take off his clothes,
say inappropriate remarks, or physically attack someone out of the blue. To
protect his younger cousins, we just stayed home. Although our self-imposed
isolation was sad, it was necessary until Alex could behave himself in public.

Certainly, we need more autism awareness in our society, but
the kind of publicity the California lawsuit brings encourages even more
negative attitudes toward autism. Autism parents must teach our children to
behave appropriately, even when it is difficult for them and for us. We must
teach our children socially appropriate behaviors if we want them to live and
interact in society. Pity parties and whining about how hard our lives are does
no good for our cause. Although we may say that our children use behavior to
communicate, another parent doesn’t care when our kids are inflicting bodily
damage upon theirs. If we can’t make our children behave, then we need to
protect them and others by isolating them.

Here’s the reality: children with autism grow into adults
with autism. We must address aggressive behaviors, whether it be with therapy
and/or medication, when the child is more physically manageable. As upsetting
as aggressive behavior is in children with autism, adults who exhibit these
behaviors pose true safety risks to others and themselves. We have explained to
Alex that as a six-foot-tall young man, he cannot touch other people because he
frightens them. We have also explained that someone may mistake his intended
friendly gesture as a threat, and they may shove or punch him to get him out of
their way, not knowing or caring that he has autism. Indeed, the media has
reported cases where adults with autism have been arrested for assault, and in
one terrible case, even shot to death by a man protecting his family from the
aggressive behavior of a neighbor man with autism. As autism parents we must
try to make our children understand the rules of society if we have any hope of
their living as part of the community who doesn’t always understand them.

While the case of the Sunnyvale, California neighborhood filing a lawsuit instead of being able to cooperate and resolve their problems reasonably is disappointing, poet Robert Frost had the right idea
when he wrote, “Good fences make good neighbors.” Until we help our children
with autism to control their aggression, we must keep the world safe from their
behavior, and we must keep our children safe from those who do not understand
them. Although we would hope that our neighbors could love our children,
perhaps at times this is best done from a distance with a fence––literally and
figuratively––between them and us.

“And you must love the Lord your God with all your heart,
all your soul, all your mind, and all your strength. The second is equally
important: ‘Love your neighbor as yourself.' No other commandment is greater
than these.” Mark 12:30-31

Sunday, September 20, 2015

When I was a kid, I loved reading The Happy Hollisters
series of books in which a family of five young siblings somehow finds
themselves involved in mysteries they need to solve. Perhaps I was initially
drawn to this fictional family because the oldest daughter is also named Pam,
but I stuck with the series, reading every one I could find at the public
library, fascinated by the ways these kids put together the clues to get to the
bottom of the mysteries. Little did I know that as an adult, I would be solving
mysteries of my own.

Because not enough is known about autism and because Alex’s
communication skills are weak, I often find myself sifting through clues,
trying to discern why he does some of the things he does. By putting together
the research that I have done over the years––especially medical research––with
careful observation of Alex, I can usually come up with potential reasons that
have reasonable validity. Sometimes, however, I must sort through a wide
variety of clues before I know the real reason.

Recently, Alex has been a little off. While his behavior has
not been that bad, he just doesn’t seem quite like himself. Because we never
want behaviors to escalate, we always try to get to the bottom of the problem
right away. After having such a wonderful summer where he was content and
cooperative, we didn’t want him to regress. Therefore, I went into detective
mode and tried to figure out what was causing small changes in Alex.

Usually the culprit for behavioral challenges is yeast
overgrowth in his digestive system, namely thrush, which makes his mouth and
throat sore, causing him to be irritable. After dealing with yeast flares for
more than three years, we recognize the symptoms and know that we must treat
him immediately with antifungal medication to ease his discomfort and to prevent
increasing agitation. Our experience has also taught us that yeast flares bring
“abcd” symptoms: acne, behavior issues, coating of tongue, and dandruff.
Fortunately, we didn’t see any of the telltale signs this time. Moreover, Alex
seemed to be his usual pleasant self in the evenings, so an ongoing problem
like yeast seemed unlikely. Therefore, we crossed yeast flare off our list of
potential causes.

Another reason for Alex to be irritable is change. From past
experience, we know that changes in routines can cause negative changes in his
behavior. Although we considered that our returning to our teaching jobs after
the summer off work might have bothered Alex, he seemed to be adapting to the
transition reasonably well. In addition, he had maintained his afternoon
schedule throughout the summer: Tuesdays with Jennifer for behavioral therapy,
Wednesdays with Jessica for respite, Thursdays with Noel for music therapy, and
Fridays with Jennifer for recreational therapy. Since his schedule had stayed
the same, he didn’t have to adapt to any changes. In addition, we had not made
any changes to his medications or supplements, so we couldn’t point to those as
potential triggers for his being a little different.

After ruling out obvious causes, I then focused on potential
environmental changes. While Alex doesn’t show typical seasonal allergy
symptoms, such as sneezing, runny nose, or watery eyes, he has in the past
acted irritable during allergy season. After checking the Weather Channel
website and discovering that weed pollen has, indeed, been moderate to high in
our area the past couple of weeks, I suspected that pollen could be bothering
Alex. However, he usually does not want to be outside when pollen bothers him,
and this week he has specifically requested to go outside in the yard, enjoying
the fresh air. In fact, being outside seems to put him in a good mood, so
pollen is probably not bothering him. Also, I suspected that some of the
weather we’ve had lately could have affected him because he is like a human
barometer who senses every change in air pressure, often acting irritable when the
pressure is very high or low. Despite thunderstorms and a deluge of rain, he
didn’t seem bothered by the weather.

Aside from the natural environment, Alex can also be annoyed
by changes in the economy. Since he watches the business news channels
faithfully, he is aware of oil and gas prices, stock market trends, and
interest rates. At times, he has been very upset by high oil and gas prices and
drops in the stock market. However, he has learned to take economic news in
stride and not let changes upset him. In fact, he often compares various
fluctuations to the stock market, knowing that things naturally go up and down,
making observations, such as, “Temperatures are like the stock market; they go
up and down.” Since Alex has come to realize that the economy fluctuates and
watches the news without getting upset, we decided that he was not affected by
the stock market, either.

After ruling out all of the usual suspects, I had to look
deeper to figure out more clues and see what might be behind them. First, we
noted that he typically seemed irritable in the morning and late afternoon, and
he was at his best in the evenings, especially after a big dinner. During these
times when he seemed off, we noted that he was anxious, impatient, fatigued,
mentally foggy, and shaky. Although he has been getting a good night’s sleep
every night, he still seemed tired in the morning. However, he would be
energetic and active physically and mentally every evening. I wondered if he
needed for his morning medications to take effect, but even when they should
have been helping, he still was not quite himself. Moreover, when he was at his
best every day, his medications would have been wearing off. I even considered
that some of these symptoms could be side effects of some of his medications,
especially the tremors that go along with lithium that he takes to regulate his
moods.

Another factor I considered was the change in Alex’s waistline.
Since Alex weighs himself every night before he goes to bed, I noticed that he
has lost some weight. Although he looks quite healthy and has lost the belly
weight caused by some of the medications he takes, something has caused him to
drop those pounds. In thinking about his eating habits, I realized that once
his obsessions about eating for set amounts of time or insisting upon three
servings of food every meal had passed, he wasn’t eating as much as he used to
eat. In addition, he didn’t seem interested in eating breakfast, nor was he
snacking as much as he used to. Not wanting to force him to eat, we trusted
that he knew what his body needed, but perhaps this was the culprit.

Realizing that he was at his best after eating a large
dinner, I began to wonder if Alex was off whenever his blood sugar was low.
After some quick research, I discovered that symptoms of low blood sugar
include the following: fatigue/sleepiness, shakiness/tremor, anxiety,
irritability/impatience, mental confusion, and dry lips. Alex had all of these
symptoms. Consequently, I decided we needed to change his eating habits to see
if eating more would alleviate the symptoms we’d been observing.

This week, Ed has been fixing Alex breakfast that includes
fresh fruit every day, and we have increased the amount of food he eats for
lunch, as well. In addition, we have been offering him healthy snacks, such as
hummus, tomatoes, and bananas, all of which he especially likes. After just a
few days of this new healthy diet, he already seems better. He has been more
active mentally and physically in the mornings, and he doesn’t seem as anxious
and irritable in the afternoons. Thankfully, he can afford to gain some extra
weight, so we can feed him more without worrying about that consequence.
Hopefully, we have figured out the problem and the solution, both of which are
fairly simple. While I’m thankful that my childhood reading habits taught me
the value of looking for clues and trying to solve mysteries, I’m even more
grateful that God shows us the way and gives us the wisdom to help Alex be his
best.

Sunday, September 13, 2015

Last week, Ed and a colleague had a conversation about their
families, and his colleague kindly showed interest in how Alex is doing. She
asked where Alex is living and if he can drive. Thinking perhaps she didn’t
realize Alex’s limitations, Ed reminded her, “You know he’s autistic, don’t
you?” Although she did remember that Alex has autism, she didn’t know the full
extent to which autism impairs his independence. Ed went on to explain that
Alex is living at home with us and will likely be living with us for a long
time. In addition, he does not have a driver’s license, and that’s a good
thing. With his impaired motor skills and the medications he takes for anxiety,
he would be a danger behind the wheel. We know this because we have seen him
“drive” Dale Earnhart, Junior’s race car on the NASCAR video game at our local
arcade. When he’s not running into the race track walls, he’s running into the backs and
sides of other cars. He will not be driving anytime soon, not even “slow on the
driveway every Saturday” like Rain Man’s Raymond Babbitt.

Here’s the reality––most adults with autism cannot live
independently. Earlier this month, The Indiana Resource Center for Autism at
Indiana University posted the following on Facebook: “Today, the unemployment
rate for those on the autism spectrum is as high as 70 or 80 percent.” However,
even they seem to need a reality check, as they added, “From the first moment
of diagnosis, we need to be teaching skills that will promote a better outcome
for our students/children.” I have some news for them: we have been teaching
those skills for more than twenty years, and Alex is still currently
unemployable, due to his impaired motor, social, and language skills, all of
which we have been addressing through multiple therapies and interventions. For
example, every day since he was little, we have worked on his manners by
reminding him to say “Please” and “Thank you,” yet he still needs constant reminders
to say these polite phrases. He’s not intentionally rude; he’s just socially
impaired, despite all our best efforts to teach him manners.

Last weekend, The New York Times published an essay by Eli
Gottlieb entitled “Adult, Autistic and Ignored” that addresses the problems
adults with autism face. As the younger brother and guardian of his older brother
with autism, he has seen firsthand what life is like for adults profoundly
affected by autism. He points out that 39% of young adults with autism receive
no services after high school, and about 90% of adults with autism are
unemployed or underemployed. In addition, he notes that little research has
been done regarding adults with autism since most autism research focuses upon
children. Specifically, he quotes a professor at University of North Carolina
at Chapel Hill, Dr. Joseph Piven: “There is almost no literature on older
adults with autism in the field, so we virtually have no knowledge base.” If no
one bothers to study adults with autism, no one knows what their needs are or
how to help them.

The recognition that adults with autism need better services
is not a new concept. In 2007, Autism Advocate published an article entitled
“When the School Bus Stops Coming: The Employment Dilemma for Adults with Autism” by Dr. David L. Holmes. This article addresses the problems that occur
once children with autism are too old to receive supports from their local
school districts. This article focuses upon the lack of available services, the
importance of appropriate placements, and potential employment options for
adults with autism. In addition, the article emphasizes planning for the
future, specifically, putting supports into place, such as Medicaid waivers.
Dr. Holmes ends the article optimistically saying that progress is being made
in helping young adults with autism make the transition from school to work;
however, the reality is that this is not so. Most adults with autism are
unemployed and living with their parents.

In the September 2013 article “Few Young Adults With Autism Living Independently,” Shaun Heasley cites research that shows that nearly 9 in
10 young adults with autism have spent time living with a parent or guardian,
and most have never lived independently. Quoting researcher Kristy Anderson,
“The evidence presented in this study suggests that the vast majority of this
population will be residing in the parental or guardian home during the period
of emerging adulthood.” I might add that these adult children will probably be
living with their parents or guardians even longer as funding for supported
living and availability of group homes becomes even more limited as more and
more children with autism become adults and tax an already overburdened system.

Despite all of our best efforts to prepare our children for
adulthood, many of our children with autism cannot live independently. Not only
are they unable to find appropriate jobs, but they also need supervision and
assistance with daily living skills, which means they require expensive and not
always available supported living facilities, or more likely they must live
with their parents or guardians. In a wonderfully candid essay, "I Never Dreamed," published this
week, autism dad Jeff Davidson outlined the reality of how much is required to
care for his son who has autism. Among the many daily tasks he lovingly
performs for his son, he states, “I never dreamed he would always need our help
with bathing, getting dressed, shaving, and all of the other basic needs.”
Unlike his son, Alex is mobile and verbal, yet he also needs a great deal of
help with his daily living skills, which is why he lives at home with us.

To be honest, Alex in many ways is a six-foot-tall toddler. Every
day, we must help him with meal preparation, getting dressed, grooming
(including washing, drying, and combing his hair, along with shaving, brushing his teeth, and
keeping his fingernails and toenails clipped), and cleaning his eyeglasses and
reminding him to wear them. Thankfully, he is very cooperative with us and
likes to be clean and neat, so he doesn’t mind that we tell him he needs to
wear deodorant, and he happily takes a bath every day. In addition, we
administer his medications and vitamins three times a day, and he willingly
swallows every pill, which is another blessing. As his personal assistant, I
arrange all of his appointments, consult with his team of therapists and other
professionals who work with him, take care of his finances, deal with the
insurance company, and do his laundry. (To be fair, I also make appointments
and do laundry for his dad.) Since he cannot drive, Ed and I chauffeur him
wherever he needs to go.

While we are happy to take care of our beloved son who needs
our help and thankful that he has made significant progress in his behavior, we
also want him to become more independent. Knowing that he will probably outlive
us, we hope that he can live a fulfilled life on his own someday. In the
meantime, we keep working with him to develop the skills he will need, praying
that God will provide everything Alex needs so that one day he can be
independent and not constantly rely upon us or anyone else for most of his
needs. As we wait, we hold onto our faith, trusting that God will always take
care of Alex.

“I will answer them before they even call to me. While they
are still talking about their needs, I will go ahead and answer their prayers!”
Isaiah 65:24

Sunday, September 6, 2015

Some people get it. When they do, we realize that God has
put them in our path to fill a need; their presence in our lives is no
coincidence. Finding the right professionals to work with our children who have
autism is an important task we autism parents face. Over the years, we have
been fortunate to find some outstanding individuals to work with Alex while
others have been less impressive. At times we have stayed with some
professionals longer than we probably should have, not ready to make a change.
Sometimes God has to push me out of my comfort zone with both hands so that I
know that it’s time to do something new. That happened last fall, and my full
understanding of the need for change was clearly reinforced this past week.

Last August, when we took Alex to the pediatric dentist he
had been seeing for nearly ten years, we were told that his upper twelve-year
molars were badly decayed and would need to be removed. This came as a shock to
us because his teeth had been fine when we had taken him six months earlier for a
check-up. What was even more frustrating was that we were told this could wait
unless the pain became so severe it kept Alex awake at night, which struck us
as negligent. In addition, the dentist left this rather important news to a
hygienist to relay to me instead of talking to me himself. This was the same
dentist who had condescendingly dismissed me repeatedly anytime I had asked
about Alex’s wisdom teeth, telling me that we weren’t going to worry about
them.

Unsatisfied with the information they had given, I decided
to make an appointment with my family dentist, whose judgment and skill I
completely trust. He wisely had a panoramic x-ray taken of Alex’s
teeth, which revealed that his wisdom teeth were badly impacted and likely
damaging the roots of his twelve-year molars, which probably accounted for
their decay. He recommended removing the twelve-year molars and the wisdom
teeth at the same time and referred us to an experienced oral surgeon. As I
explained in my November 9, 2014, blog entry “Healing,” Alex came through the
surgery to remove his molars and wisdom teeth­­––as well as the recovery
afterward––amazingly well, and we were thankful to have this procedure done by
such a skillful doctor.

After this experience, I began to question the pediatric
dentist’s decision to ignore my concerns as a parent regarding Alex’s wisdom
teeth. Perhaps if he had taken my questions more seriously, Alex would not have
lost his twelve-year molars due to the damage by the wisdom teeth. Moreover, I
was not happy with his dismissive attitude toward me and insistence that any
dental procedures done on Alex be performed under general anesthesia, which
carries its own risks. Consequently, I decided it was time for a change. For
his next regular dental appointment in February, we took Alex back to our
family dentist. Encouraged by the kindness and compassion shown by both the hygienist
and the dentist, Alex complied beautifully with having his teeth cleaned and
checked, and we felt this was a sign we had made the right decision to change
dentists.

When we took him again a few weeks ago for his six-month
appointment to have his teeth cleaned and checked, we were pleased that Alex
was quite calm and comfortable at the new dentist’s office while they worked on
his teeth. However, we were a little disappointed to discover that he had a
small cavity. Nonetheless, our dentist felt confident that Alex could handle
having the cavity filled because he had been so good during the cleaning and
check-up appointments. In addition, we were able to schedule an appointment to
have the tooth filled the next day, which meant that we could get this
procedure done before I had to go back to school the following week. Or so we
thought.

The next day, the appointment began with putting numbing
cream on a cotton roll as preparation for the numbing shots. As the numb began
to spread through Alex’s mouth, he started to panic at the strange sensation he’d
never felt before. (When he’d had his first two cavities filled two years
earlier, he had been under general anesthesia instead of a local anesthesia.)
He also wasn’t very happy about having the wad of cotton under his upper lip
and complained that he had a fat lip. Although he never really escalated, he
was anxious and kept grabbing my hands, seeking reassurance. Even though we
tried explaining to him that this was temporary and that his lip wasn’t really
fat, he was still unnerved (pun intended) by the situation.

Fortunately, our compassionate dentist understood Alex’s
anxiety and offered an excellent idea. He gave us a tube of numbing cream and long
handled cotton swabs to practice at home with Alex so that he could get used to
the sensation of numbness and realize that the feeling does wear off in time.
Additionally, he reassured us that Alex’s tooth could wait a few weeks without
worrying about further damage, so we could reschedule the appointment when we
felt Alex was ready to handle it. Most importantly, he emphasized to us that he
didn’t want Alex to be scared, and he didn’t act a bit inconvenienced that Alex
wasn’t up to having his tooth filled that day.

After practicing with the numbing cream at home, Alex became
comfortable with the sensation of having his mouth numb, and I went ahead and
made another appointment to have his tooth filled. Truthfully, I had a lot of
trepidation about whether he could handle the numbing shots, the drill, and
everything else involved in repairing the tooth. Nonetheless, we prayed that he
would not get upset and put our trust in God and our dentist that everything
would be okay.

Last Thursday, I scheduled a noon appointment: after lunch,
between The Price Is Right and Jeopardy!, and at a time when he is usually
fairly mellow. The dental assistant took us back to a large private room where
Ed and I could also stay with him comfortably and where they could close the
door so that he wouldn’t hear noises from the other procedure rooms.
After turning on the television to a baseball game that provided a welcome
distraction, our dentist and his assistant compassionately and calmly took care
of Alex’s tooth, preparing him for every step of the process by explaining what
would happen and praising him for being so cooperative. Thankfully, Alex was remarkably calm and didn’t seem bothered a bit by anything they did to his
mouth. He appeared completely comfortable and relaxed the entire time he was in
the dentist’s chair, which was a blessing. The dentist did everything possible
to reassure Alex, and Alex trusted him completely.

In fact, things went so well that with our approval, the
dentist also sealed another tooth to prevent decay since Alex was already numb,
and the assistant smoothed a tooth that had been chipped a while ago so that it
would not bother his lip and would look better. Not only did Alex sail through
the planned procedure, but he also handled the extras added at the last minute quite well. Of course, Ed and I were extremely relieved that things went smoothly, and we were especially proud that Alex handled perfectly a new situation
that many people find difficult. We also truly appreciated the understanding and
wisdom of our dentist, who knew what Alex needed to feel safe and comfortable
and waited until he was ready.

Consequently, we know that God has led us to change dentists
to one who can provide what Alex needs. We need someone whom we can trust to
take care of Alex and not only make him feel comfortable in a new situation but
also provided a good first experience that will make him not afraid to face
similar situations in the future. As Alex now ends his nightly prayers, “God
bless Dr. Lyzak.”

“He will once again fill your mouth with laughter and your
lips with shouts of joy.” Job 8:21

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.